Tag: awareness

Tell the NIH about your experience of PEM

Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an

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Director Collins responds to 55 Congressional Representatives' Letter of Concern

Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions of Americans struck down by

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No more 'should': the aim to stop punishing myself for having ME

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

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Attend the IACFS/ME conference this month

Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How can I increase the chances my disability application will be or continue to be approved? What medications can I try for fibromyalgia now that morphine and related prescriptions are restricted?   Come to our international scientific

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Join us in the #isignedfive challenge!

Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a

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US: #MillionsMissing Protest Demands

Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents. The survey demonstrated overwhelming support

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